October 19, 2015 - What I wish I had known

I’m helping (?) a friend navigate prophylactic mastectomy. It’s crazy to me how 3 years later (8 or so weeks from my most recent surgery) you still can feel every nuance of mastectomy, as fresh as yesterday’s rain storm. One question from her can send me right back into that moment with the flip of the switch. What surprises me though is how her questions totally align with my own experience. And it’s teaching me that surgeons can do a better job of preparing women for the first few days after mastectomy. But the fault is also mine as I did a poor job of preparing her and others upfront. Part of that was I didn’t know what I should reveal upfront (as in this is part of everyone’s journey) verses what tidbit I should wait and see if it comes up (as in maybe it was just part of my story alone). Almost every single thing that has come up for her I could have prepared her for in advance. So now I know. And therefore now I am putting together this list to have on hand based on my experience and the feedback of some others. She thinks I am helping her. Well, little did I know that she is very much helping me. Ron and I have been in awe at what we thought was our experience, very much translates into the experiences of others…and therefore making me feel a little more normal.

This list is compiled based on my experience and feedback from some of you after your procedure. It is by no means comprehensive (not by far!), but hopefully it at least gets you started. I’ve made much shorter more superficial lists in the past, but have learned in recent months that a concrete list you can get to quickly may better serve me as I come in contact with others facing their mastectomy journey. This list is not meant to overwhelm but rather to equip you upfront, early on, before you find yourself spinning in the moments of mastectomy. Knowledge is empowering in many ways and gets rid of some of the fear or worrying of “what should I do?”. If you have other tips let me know. I would love to have this list grow so we can share it with other women at time of need.

1.    It’s best to get on a defined schedule early on. Think of toddler sleep training or infant schedules. You and your spouse find times that work for you and stick with it. It takes the guess work out of when to do what, adds structure and security, and helps prevent a chaotic evening because you forgot to fit something in earlier in the day. For example, assign 2 times a day to empty drains, assign a time for your shower (more on that later), figure out meal time, have food drop off at a specific window of the day, pain meds here, and so on.
2.  Drains can be painful, drains can be comfy. I didn’t learn the latter was an option until my sixth surgery. It comes down to drain placement and how much is coiled up inside the breast. You may be luck and have the comfy set.
3.  Drain volume will start heavy and lessen with each day or so. There may be a little up and down in volume, but not much. The goal is about <30 ml output in a 24 hours period. When you start approaching that you can know you will be very close to getting the little suckers out!
4. You may need less pain medications than you thought. Mastectomy results in the removal of nerve endings, so you can feel some stuff, but not near as much as you would think. After about 48 hours post-surgery, you may find you can start weaning yourself off.
5. While you take pain meds, be sure to add in a stool softener or stimulant. Just trust me on this. Start the day after surgery and stick with it. You don’t want to get behind the eight ball here.
6. Emotions may be high early on, but soon after drain removal, you start to feel more normal. Just be ok with the fact that you may find yourself in a puddle of tears for seemingly no reason at all. There is a reason, you just may not understand it. Try to just get through the early days. Go on auto-pilot. Over time you can dive deeper. You most certainly will feel something and it may vary from hour to hour. Don’t be ashamed in what you feel. Know you most likely are having very normal thoughts and emotions. Don’t be afraid to reach out.
7. Related to # 6. You are going to feel strange at your first attempt at a shower. I now know that several of us were on the verge of “passing out” (I blame the heat and blood pressure effects), and close to if not already in tears. I thought I was very alone in this response, and now know many women report similar experiences at shower time. The surgeon tells you to shower. And it’s important that you do. But let’s do a modification to it. I’d say you may be smarter to sit in a tub with just a few inches of water. Keep the drains hooked up so there is no risk of them or the incision touching the bath water. Get an empty cup or bucket and use it to pour FRESH water from the faucet on your head after you soap up. It is very important you remember NOT to use the water from the bottom of the tub, just fresh water from the faucet. You are mimicking a shower, but you don’t have to hold yourself up standing in a hot shower with little airflow. Best decision you will make for shower time. No passing out feelings, less tears. (I now have several people who stand by this as well after trying it).
8. You may feel like passing out when it comes time to change bandages or what not. ALWAYS do these tasks laying down. Go ahead, close your eyes, have some music playing in the background, and go to your happy place. Leave the task to your caregiver. You just show up, that’s it.
9. Get a lanyard or wide ribbon to wear around your neck. Hook your drains to that. No risk of getting them caught on your waist band when you go potty and easy to use in the shower/tub.
10.  Heaven forbid it is time for your first “glance”. I would recommend you wait a few days for that. You may think you are ready early on. Chances are, you are not. I have several women who confirm this and wish they had waited until their body have healed some. I’d say give it at least a week or so. And when you do it, blare some happy music in the background. And make sure someone is there with you. Either in the room or right outside the door. You may be surprised at your reaction. And remember how it looks in week one is not how it will look in month 2.
11. The scars ALWAYS look better than what you can conjure up in your head. Another reason in addition to #10 above to wait a bit before looking is that time allows more healing = better appearance = less hyperventilation. Give them a chance to heal before you start judging them on the cat walk. Let your caregiver worry about inspecting it early on for healing. You wait it out and look at the art work when it is ready to be looked at. Trust me on this one.
12. When you think you are ready to take your first trip out of the house. Wait one more day. = ) Just make sure you have at least 2 good days in a row before you tackle that.
13. When you think you are ready to go out to dinner for the first time. Wait one more day. = ) And go alone. You may think you want to meet friends out because you do get stir crazy and lonely at home, but you will be surprised how exhausting the event can be by the time you dress, get parked, walk in, find a seat, order food, then try to eat. Go first alone (with family) as a trial run. If you do that successfully, THEN invite others to join you.
14. Don’t be surprised if you have a “shooting pain” sensation. Think of it like a “shock” feeling running down a nerve in your breast. Though the nerve endings have basically been removed, you still feel this phantom like pain. It varies in occurrence (several times a day, once a day, once a week) and duration (1 week post, 2 weeks post, 2 months post, eternity). Mine never went away as in 3 years later I still have them. Some of them can take your breath away, others are more minimal in severity. It’s normal for this to occur post mastectomy and nothing to worry about. Pain that is growing in duration or severity could be a sign of infection and should be reported.
15. Your breasts are going to be swollen. This swelling can last for months. As time goes on the body will reabsorb the fluid and they will diminish in their “puffy” appearance.
16. While early on in this process (if you were open about your procedure) you may feel a tad overwhelmed with the outpouring of support. That is a wonderful part of mastectomy, the love and support you receive. Overtime, you may notice you start to feel alone. While people come out in droves early on, the numbers will drastically decrease after a few weeks. This is normal of course, but for you, you are still in the middle of mastectomy many months later so it can start to feel lonely as everyone moves on with their lives, as is expected, and you are still stuck in the middle of yours. Be sure to reach out and stay in close contact with your closest of friends. They can help you ward off some of that loneliness you may find in the aftermath. You may also feel more loneliness the day your caregiver returns back to work. Prepare yourself for that by maybe pre-arranging a visitor that afternoon. Or asking your caregiver to maybe do a half-day back at work that first day for you to ease back in.
17. And related to #16, you are going to hear 100 times over how “brave” you are. And the very last thing you are going to feel in the moment is “brave”. In fact, you may start to loathe the word, as what you actually are feeling is very scared, fearful of the unknown, guilt, and so on and so on. One woman recently said to me “if I hear one more person tell me how brave I am, I’m going to scream!”. Just know the word is very well intended and yes in fact there is a form of bravery for CHOOSING this procedure. Know the word is going to annoy you, and also know that in the eyes of others you are in fact brave, whether you feel it or not.
18.  Sleeping is a challenge early on. Finding comfortable positions can be tough, and getting up and down from a laying position uses muscles you wish it didn’t. You just had you pectoral muscle filleted, so go easy. Some people prefer sleeping in a recliner. Some a bed. Try one out one night and one the next night and see which goes best. Also if you are laying on your back in bed, maybe get a foam wedge to help elevate your head and use pillows under your arms to reduce the stretch of the chest muscles. Just know up front it may take you a while to find comfort any given night. It’s going to be at least 2 months before you can lay on your stomach again. If your back starts hurting, try a night on the floor. Just have someone close by to help you get back up. (I learned the hard way).
19. If you are choosing a surgery date, try to avoid the summer months. It’s super-hot and sticky for one. And for two, you have water restrictions for at least 6 weeks post-surgery. It’s no fun to have all your friends at the pool and you at home in a sports bra on the couch. Having had surgery in all seasons, I would choose the fall months. It’s tough to be stuck inside in the summer, and it is really tough on the chest muscle in the super cold months when you walk outside and have muscle “clamp down”. Spring or fall is the way to go when given the choice.
20. On surgery day, you will want to take these items with you:
1. A lanyard for your drains to clip on
2. A pillow to hug for the ride home and maybe an extra pillow for behind your back
3.  Sit in the back seat and put the seatbelt around your lap, but the chest strap behind your back instead.
4. A book, or music, or crossword puzzles or knitting, whatever. It’s easy to get anxious waiting for surgery to start. Take something to distract you. You don’t want your mind wandering around worrying about 
21. On surgery day, your caregiver will want to take:
1. A book, or music, or crossword puzzles or knitting, whatever. It’s easy to get anxious waiting for surgery to be over. It’s a super long day (upwards of 5 hours). Take something to distract you. You don’t want your mind wandering around worrying about things.
2. Have friends or family sign up for time slots to join you so you don’t have to do this alone. Your mind will wander too much with anxiety. (see # 22 below)
3. Food, It’s a long day and you might not want to head to the cafeteria for fear of missing an update from surgery.
4. Power sources for your electronics. Again, it is a long day.
22. I am hopeful you have friends turn out to support your caregiver during surgery. However, chances are you are not going to be ready to see these friends after surgery. You may think up front that you want to see people right after. Don’t be surprised if you change your mind. GO ahead and have your caregiver warn people that they might not get to see you after surgery. You will likely want some space to yourself to adjust and you don’t want your friends to be surprised if that happens. Go ahead and assume you will not want to see anyone outside of immediate family for that day or a few days afterwards. Play it by ear.
23. You will feel “something” if you go for delayed reconstruction or the placement of expanders. During this time your breasts will be much smaller than what they were before and what they will be in the future. In the case of delayed reconstruction, you may even have a concave appearance. In the event of expanders, think more flat chested or size A. For some women, this is a big change from where they were before, so it’s ok to have some emotions around that. Just know that it is a temporary event (unless you choose not to undergo reconstruction). It’s strange to see that change happen overnight the day of surgery.
24. Your breasts are going to be numb, and it will catch you off guard. You may or may not get feeling back after reconstruction. I am 3 years out and can only feel the top ¼ portion of my breasts. Some women get more feeling back, others get none. This can feel very strange. You see yourself touching the breast, but you feel nothing. It needs to be said that this may have profound effects on your sexuality. You will want to prepare yourself and your spouse for this. Sexuality is different after mastectomy in a number of ways. You may be more self- conscious, Sensation changes. Positioning may require tweaking. Desire may be less. There is a whole list of things that can be said here. Likewise, you may have no impact at all. If you are having issues, you are normal and there is a good bit of literature out there about the impacts of breast cancer and mastectomy on your sex life. There are resources available, but I also think time is a huge healer.
25. Your bra size, though hopefully similar to the before, may vary just enough that you will need new bras. You may also no longer need underwire. You will have to avoid underwire for at least 2 months post-surgery so as not to add pressure to the reconstructed area, but after that period you may find you have enough lift that you don’t need it at all. It will be a while before you are back into your silk and lace, so just prepare yourself for that. Also, if you experience swelling, that may affect your bra fit as well (and swimsuits).
26. There are going to be moments when you need a girl friend or mother on hand. There are some emotions you need a female to process with. Your spouse is going to sometime feel lost because he can’t process all the emotions you are experiencing. Don’t be afraid to call in re-enforcements for a gal chat.  Better yet, find someone who has done mastectomy before. You don’t even have to know her before-hand. Your surgeon can help you find a fellow patient. Introduce yourself to someone in the waiting room at your pre-op appointment. Ask on social media. A friend of a friend. That person can be an invaluable tool for you to prepare for from day to day, or to simply say “is this normal?” A stranger can very quickly turn into a friend.
27. You never truly get over life events. You simply learn to get through them. Mastectomy won’t define you, but it will always be part of you. Let your story have purpose and let your story not only heal yourself but also those around you. You never know when the person watching you ends up in your very same shoes. Mastectomy can feel devastating, but over time you may find it feels empowering. Just know that takes time. And don’t rush the process.
28. Prepare in advance a section of your closet as a “safe to wear” after mastectomy. Think underwear, yoga pants, loose fitting clothes. Things your caregiver can walk in a easily grab from the safe section and know you can put it on. Trust me, this is more for him and less for you, but it will alleviate many frustration on both ends.
29. Make sure your spouse feels supported. He will have a lot of emotions of his own and he is likely going to feel alone in that. He probably won’t vent verbally so plan for the guys to come kidnap him one night and take him out for some mindless fun. Caregiving is exhausting, sometimes even more so than being the patient. Have girlfriend come hang out with you. It’s a win-win for your both.
30. Know you can do this! The day before mastectomy you are going to feel so completely overwhelmed, but trust me the day after mastectomy is so much better. The unknown is now known and each day after get easier. Then you find yourself at a week and ready to take some trips out, then two weeks, then a month, then you are back to work and it’s all behind you and you find that mastectomy though different than you imagined can really bring about some amazing things in your life. Yes it’s scary, and yes, it’s challenging on a million levels, but oh does it bring about so many blessings. I hope that you find yours. And I hope you find ways to thrive in this moment.

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October 12, 2015 - The moment when you wish your stirrups were instead the other kind

To say I was in a funk would be a gross understatement. Foul, putrid, throw me out with yesterday’s trash. I’d say Ron considered it (throwing me out) for a few minutes when he woke me up super early to tell me about the tire. Yes, the third nail we’ve had in 1 month (2 for me, and 1 for Ron), AND just a few days following getting 4 brand new tires. My lid was going to pop! Mount Karkar was going to spew its angry habanero volcanic contents into my bedroom floor. I had HAD it! Enough! My 4 hours of sleep –thank you insomnia- now interrupted as my mood certainly was not going to allow me any more slumber. I wearily (and angrily!) climbed out of bed with plans to be ready to go asap so I could be first in line at the tire shop while Ron made his way into work for early meetings. Shower, change, grab, go. I arrived after a miserable can’t stand my mood 10 minutes and parked my car in the non-existent line (because a line of 1 car is just a dot), in the dark with no one around, turned off the ignition, banged my palm on the console in frustration, then laid my head down on the steering wheel. Sally!!!! Get it together! What in the world is wrong with you!?!?!

This tire had unearthed something else. I don’t get angry over a tire (be it twice in one month after purchasing brand new tires!) Something deeper was eating at me and for the life of me I couldn’t figure it out. And every little nuance of my day (the empty gas gauge that was at that very moment staring back at me through the steering wheel, the dead cell phone because of the corrupt phone charger cord, the pressure of decisions in something we thought was behind us, the 4 hours of sleep, the vet appointments, disappointment in a friendship, barely escaping snapping at Ron 20 minutes earlier) was bringing it to head. I was acutely aware I needed a soul cleansing yell at the top of my lungs alone in my car in the tire store parking lot to circumvent a repeat of  this awful moment captured here -The Laundry Room Floor.

You’ve been there, I know you have. It’s the moment when you need to take action alone by yourself so that you can gather your wits back together to go on with the day’s tasks (picking up the toddler’s spilled lunch in the floor, sopping off the wet paint on the carpet, attending the meeting that follows the one you just suffered through, walking back into the cubical farm to finish out a day after giving that patient bad news). I absolutely needed that moment to clear my head and restore sanity back into the delightful Sally I had left behind the night before. So with my head down on the wheel in the dark parking lot I started to regroup…..until I heard the knock on the window and glanced up to see a confused station attendant looking in. And how in the world could I then not bust out laughing? After convincing him that I was ok, we got the task underhand and an hour or so later with a blog post scribed, I was back on my way to work (via the cell phone charger purchase and the gas station refuel). Sanity back in tow and rationale thoughts back in my repertoire, I can clearly see again that God is still the God of women who bang their hands/heads on steering wheels. His promises are true despite my inability to claim them some days.

II Timothy 4:17 - But the Lord stood at my side and gave me strength, so that through me the message might be fully proclaimed...And I was delivered from the lion's mouth.

Hearing those words recently and them coming to mind in this moment reminded me of all the promises when finding yourself in circumstance. He is the God of any and all of my situations, no matter how trivial or how overwhelming. And maybe through me and my circumstance, he will change a life. I simply have to be his vessel for whatever purpose he wants to purpose it. Even a flat tire. On an inopportune day. After 4 hours of sleep. When you have an awesome interaction with the attendant in the store at zero dark thirty when she is obviously happy to be at work and beyond helpful at this ridiculous hour when all you want to do is crawl into a hole.

So I am refocused and back on stride. I am not thinking of my circumstance but now focused on the two families you guys have been helping me pray over. One has a surgical follow-up appointment early this week with hopes of getting good news. Go ahead dive in on that Prayer Ship with me. The other, I hope to see later this week when I drop off food. Prayers that their week is restored with blessings and healing. And now I add to your list a third and fourth. The third is entering prophylactic mastectomy on Wednesday. She’s feeling every single thing you feel the week of mastectomy. Emotions are high and the fear of the unknown is in full force. And the fourth is a new cancer diagnosis. She has been a gem to my family (especially to my mom) as I have navigated my past 3 years, so I am hoping the same for her in return. There is so much happening around me these days and I am grateful for people who partner up in prayer for people they don’t even know. Thank you!

Totally shifting gears, I do want to mention a hysterical moment from this past week and prior to this tire mishap the original reason for my next post. I don’t even know if my re-telling will even remotely begin to do the moment any justice. But it started with me in stirrups. (It’s not every day you get to tell a story that starts in stirrups, huh?) Yep, in stirrups. And not the fun can’t-wait-to-get-to-the-campfire-horse-riding-calf-roping kind of stirrups, but the other kind. The girly kind. “The seriously, it’s time to do this again???” kind. The OB/GYN kind. And it’s the moment when you wish your stirrups were instead... the other kind.

The paper gown was as delightful as always. The room temperature was as frigid as always. The lights above as florescent as always. And the eagerness to be done was as eager as always. I had just finished recapping my vacation plans of the summer past (cause what else do you talk about to pass the time) and then she says “so are you happy with your new breasts?” What??? Did you just ask me “was the beach trip awesome?” I am sure that is what you just asked me. “Huh? Well, ummmm. Honestly that is a loaded question. Do you have an hour to spare?” She had the most sincere of intents with asking about the elephant in the room as we had just reviewed my surgical history to update her records. What I wanted to say was “Do you have a few minutes to read a blog post of mine? Because I don’t think I can do the response justice in current state.” Doesn’t she realize her reading a summary with me nowhere around would be way easier than me regurgitating the concept of having a new hand (see previous post here It's not YOUR hand) while sitting here on her lovely BBQ Restaurant quality paper tablecloth covered examining table with my feet in the air? And you thought talking about summer vacation was an awkward topic for the venue. I was so taken back. Not because it wasn't a fair question, but rather most likely because I was scantly clad in the middle of the dread of the dread and thinking about anything but my boob. It 100% caught me off-guard. And it took me forever to recover the fumble and pick up the ball to get back into my sprint toward the end zone. I was paralyzed by the question and didn't know how to get the topic back on track to the "safe" topics of the stirrups. Three years post mastectomy and these boobs still know how to catch me off guard.

“I mean, I guess so. They are just different.”

I spared her the detail of the new air bubble I had recently discovered that totally freaks me out when I lie in bed at night to read and then see it move across the boob traversing ever so slowly from left to right. My new David Letterman (now someone else) worthy “stupid human trick”. We all have one.


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October 2, 2015- I don't even know how I am supposed to be

“I don’t even know how I am supposed to be.” I had asked him how he was doing. He had just come through a traumatic life event and was in that stage of not really knowing up from down. I had been expecting a more typical answer. “I’m doing good.” “I’m getting by.” “Day by day.” Instead I got an answer I had offered myself one time before.  I wasn’t expecting that. Immediately, his response jolted me back to 3 years ago a few weeks after my mastectomy. In that moment, I was reading a kind note from a co-worker where she was telling me how awesome I was doing considering what I had just done. I remember as I closed out the email saying to Ron “Gosh, her words are so kind, but how in the world does she know if I am doing well. I have no idea how I am supposed to be doing."

His statement is a deep one. And it brings up a few valid questions. Who has the measuring stick? Is it the first person who ever had mastectomy (failed relationship, death of a parent, lost child)? Is THAT the person I am measured against to determine exactly how I am doing in my moment? Is it the famous person now writing a book that I am measured against? Is it that I cry too much? Cry too little? Am I happy go lucky? Am I encouraging? Am I a Debbie-downer (sorry Debbie, whoever you are!)? 

His 10 little words had me really dwelling on these thoughts of when am I “enough” of “whatever” measuring stick to be labeled as “ doing so well”? I can think back to specific moments when I myself felt as though I certainly measured up enough to give myself a high five. I’d say this last surgery was one of those moments. I had gotten over my fear of the scars and felt more “together” than I had previously. While I had dread of the recovery period, I didn’t have fear.  There was another moment during my cellulitis treatment when I found out I was getting admitted. I was supposed to spend that weekend with my family, so a hospital admission was far cry from those fun plans. Lead Plastic Surgeon told me I was going to need surgery, and despite that revelation of changed plans from fun to yucky, I somehow felt this inner peace. Mentally, I was together.

I can also look back and see times when I absolutely knew I had failed in "measuring up".  Burned in my memory is an intense moment (you’ve heard me speak of this before) when I very much knew I was not doing so well. I didn’t need someone else to tell me, it was quite obvious in and of itself. It was a few days after my mastectomy and before I had started the reconstruction process. So in that specific time frame I had no breasts. One this given day, my mother was in the living room cleaning up this or that. Ron was somewhere else in the house having recently come in from work.  I was alone our guest bathroom standing in the shower with my back to the shower head as the water fell over me. I vividly remember being frustrated with the vinyl shower curtain on my right side as it kept getting it stuck to my arm. I remember punching it multiple times with more forces than needed. I had a washcloth in my right hand and had just applied the soap to it so I could start the scrub process when with absolutely no notice at all I landed myself in uncontrollable gut wrenching sobs. There I was in the shower breast-less and without the mental capacities to understand why, and how, and where. At that very moment it all came crushing down, and I was acutely aware I was anything but ok.  Somehow I managed to pull it together enough to finish out the task and get back to my bedroom, but I knew the only thing left to do for the sanity of myself and everyone around me was to climb straight in bed. Even without said measuring stick, I knew I was not ok. And everyone in the house knew it too. 

It wasn’t until recently that I could look back on many of these moments and put much thought into an evaluation of how I was doing at any given time in the process, but I do know there is this evaluation going on by those close to you in the moment. Someone is looking at you deciding if you are doing well or not doing well, accurate or inaccurate, that assessment is happening every time you come in contact with someone who knows of your dilemma. Someone holds a measuring stick and you either measure up or you don’t.  And if someone else isn’t making you aware of the measuring stick, you yourself know one exists and find yourself doing the exact same assessment on your own. 

After a lot of contemplation the last 3 years, and most recently after this conversation with my friend, I’ve realized that not knowing how you are SUPPOSED to be doing can be an unsettling feeling. You constantly feel this pressure to be something in any given moment and you worry too much about whether you measure up. You totally want to be the superstar. Some days you know you succeed and some days you know you fail miserably. Other days you think you are at the bottom of your bucket and a friend comes up to tell you how encouraging you have been as they watch you navigate your issue. Perception being their reality. There is no right way to do anything. There is your way. You need only measure up to yourself. Take that measuring stick and fling it out the window with every ounce of energy you have (ok, I want to say here that I realize there are times when people are in a really bad place and they need to get help, I just mean when you aren’t  in any danger to yourself or others there is no right way to get over an issue). Instead, for me, I think it is best to just look at the daily/weekly/monthly trend and make sure you are moving closer back to your normal with the passage of time. Accept that some days you may find yourself standing in the middle of a shower in sobbing tears. Accept that other days you feel so great you convince your husband to drive you to the donut shop. And realize that those days may be back to back to each other.  There is no way to “be”. There is just where you are. And over time, you find yourself moving from here to there. 

“I don’t even know where I am supposed to be”.  When we said it we had no idea what a blessing that was. Not knowing the measuring stick sure does take the pressure off. 

(Note: I don’t want to discredit that even the “smallest” of things in life can cause PTSD. Don’t be afraid to find someone to help you through it. No shame in that, dear friends).